One of the most frightening aspects of my breast cancer diagnosis in 1998 was that I never knew my symptoms might be breast cancer until the doctor told me I needed a biopsy for inflammatory breast cancer. I didn’t know that breast cancer doesn’t always start with a lump.
About eight weeks earlier at the beginning of February, I jumped when the water hit my breast in the shower. It hurt-really hurt. I turned down the water pressure and forgot about it until the same thing happened the next morning. What was going on? My first self-diagnosis was that my breasts must be tender from hormonal changes. But by the third morning, I realized that if only the right breast hurt, my hormonal theory wasn’t likely.
I wasn’t worried. I believed the myth that breast cancer doesn’t hurt. I had just had a clean mammogram before I moved to Missouri in December, so I knew I didn’t have a lump. But I was starting to feel more frequent pain and an itching deep in my breast. On Valentine’s Day, a new acquaintance invited my husband and me to a dinner party, and I could hardly pay attention to the conversation because the pain and itching were so intense.
By now, I knew that something was seriously wrong, but I didn’t want my first visit to a doctor to be about an itchy breast. I would sound like a hypochondriac. Fortunately, I had developed a cyst in my left breast. That was a symptom worth bothering a new doctor about. My doctors had always taken cysts seriously.
My new doctor sent me off for a mammogram and ultrasound of both breasts, but didn’t seem concerned about the right side. By the time I saw the radiologist, the right breast was pink as if I had a light sunburn or had just stepped out of a hot shower. My breast was also a little puffy and swollen, but the radiologist didn’t appear worried.
Sure enough, I did have a cyst on the left and no problems on the right. No one seemed to consider my pain and itching to be a medical problem. Back at my doctor’s office, I suggested that maybe the swelling and pinkness on the right indicated infection, but he dismissed my concern. He did want the surgeon to evaluate the left side to see if the cyst needed draining.
No one seemed in any rush about my symptoms, so I scheduled appointments around my work schedule even when that meant a delay. Six weeks after I first jumped back in the shower, I woke up to see the upper outer quadrant of my right breast covered in a dark red/purple circle of streaked, dimpled skin. I was sure now that I had an infection, and because of the overnight change from light pink to angry red, I was very worried.
The surgeon didn’t look worried when I showed him what had happened, but finally someone seemed to be agreeing with my infection self-diagnosis. He prescribed an antibiotic. I wasn’t alarmed when the antibiotic didn’t work. The red place wasn’t getting any worse. I thought the doctor would just try a different antibiotic.
Instead I saw the first of the many worried medical faces I would see over the next few years. The doctor shocked me when he said he would have to biopsy for a type of breast cancer I’d never even heard of called inflammatory breast cancer. This couldn’t be happening to me. I was well informed about women’s health issues. I’d done my monthly self-checks. I’d never read anywhere that my symptoms could be cancer.
Later, I read the self-check directions again, and realized that I’d always assumed that line about dimpling refers to a change in shape caused by a lump. It doesn’t. It refers to a symptom called peau d’orange (French for orange peel), which is what my red, dimpled patch looked like.
The doctor’s voice washed over me while he explained about the biopsy. I didn’t absorb much of what he said. Two words did pierce my fog: lymphatic system. When he finished talking, I said, “What was the name of the kind of cancer? What were you saying about the lymphatic system?”
So very kindly, he started back over again. Yes, inflammatory breast cancer involves the lymphatic system, which is why it is the most dangerous form of breast cancer. It starts in the lymph vessels of the skin of the breast and often doesn’t present with a lump. Because it’s in the lymph vessels, which carry fluid through out our bodies, it often spreads with deadly results.
The surgeon said he didn’t think I had inflammatory breast cancer. Usually people with it have more swelling and discoloration over the entire breast. But he thought it important to not take any chances. Too often he said doctors try several rounds of antibiotics before they realize they are not dealing with an infection, and by that time, it’s too late.
Thank goodness, I had a knowledgeable doctor who didn’t take any chances with my symptoms. It turned out I did have inflammatory breast cancer, which is often just called IBC. Eight months after I finished chemo, surgery, and radiation, I started the waiting game to see if all those treatments had really chased the cancer from my body. I got used to worried doctors’ faces. I also started my mission to spread the word that not all breast cancer starts with a lump.
Five years after my diagnosis, my doctors said they thought that my cancer would have shown its ugly face again if it were still in my body. They also scheduled another appointment for next year. In the IBC world, doctors don’t usually use the word “cured.” But I’m almost ten years out now; I’m feeling good; I’m telling people, “Not all breast cancer starts with a lump.”
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.